BLOG#2 What to do While You Wait; Diagnosis, Denial, & Doctors with < My Thoughts > by Sara Luker

BLOG: #2 "What to do While You Wait" - Diagnosis, Denial, and Doctorswith < My Thoughts > by Sara Luker​Diagnosis, Denial, and Doctors​Just so you know what others have faced, and that you are not alone… here are a few focused excerpts from my Extended Book Reviews with < My Thoughts > by Sara Luker.

Parents often must wait days, weeks, and even months for assessments or doctor appointments. During this stressful time, it's good to feel that you are actively helping your child. This can become an important time of clarifying what bothers you the most about your child's behavior, development, or other concerns.

Video record (using phone app) what you are seeing and how your child is acting throughout the day/night. 'Seeing is believing' for someone new to your child. Prioritize, try new things that are non-invasive and see what works and what doesn't. This will also help you find out what your child responds to. Some learn best by hearing, seeing, or doing.

Eventually, you will have to choose from available programs, therapies, and services that will be offered. Some are quite expensive, so understand your child well enough to figure out what will probably work and what absolutely won't. You can only know this by trying some things on your own. In this 'page' I’ll give you some ideas on where to start to discover who your child is 'behind' the autism.

Note: In the excerpts from the books > (0% indicates location in the Kindle version of the book, instead of page numbers. Please go to my Webpage Menu for References & the complete Extended Review, by book title; you will also find a Link to Amazon to view the book, if you wish.)=============

5% Greg became obsessed with Sesame Street. When he was one-year old, he did thirty-piece puzzles. The new baby next door couldn’t do anything except eat, cry and play with a rattle, but not Greg. Clearly, he was brilliant.

5% He had some quirky behaviors that we explained away easily. His repetitive play confused us as much as it entertained us. After all, how many children stayed at a task for hours?

I faithfully recorded each new word in his baby book and according to our pediatrician, the same doctor that Jay had as a child, Greg was developing normally. I don’t know how Dr. Karp ever came to that conclusion since Greg screamed through every appointment.

< My Thoughts > “…screamed through every appointment.”

Major, et al. (2013), brought light to the fact that “…there has been little focus on improving ASD education during pediatric residency.” This study was to evaluate the curriculum that was out there regarding autism. They found a promising one teaching future doctors these 7 case-based modules –1. Early warning signs of Autism2. Screening for Autism3. Communicating concerns: Screen & diagnosis results4. Making an Autism diagnosis5. Early intervention & education6. Treatments for Autism7. Autism-specific anticipatory guidance

In the conclusion, the authors stated that most pediatric residents felt training was important to their careers, but that “the current program was inadequate” and furthermore, “rated their competence regarding ASD as poor.”

Gonzalez, et al. (2015) offered a study which was designed to show how children with disabilities improved over time with early intervention. Instead, they discovered the there was a huge disparity between white children being treated and the treatment of ‘ethnic others’.

Among the reasons they gave was the family’s lack of access to traditional medical services or health care providers. Another was that pediatricians were not always familiar with early identification and referral practices. As well as lack of health insurance in spite of the Individuals with Disabilities Education Act (IDEA) Part C stating the families are to receive services regardless of their ability to pay.

Some pediatricians, it was reported, took the “wait & see” approach to developmental delays they recognized in the patient they did see. And, one of the reasons was that they didn’t know where to refer them next. Also, in the rare cases where they found doctors who did identify and refer children they suspected of delays, the parents did not want to follow-up, for whatever reasons.

6% Greg looked so normal when he was little.

People started to stare the older he got. It wasn’t so cute anymore to see Greg have a conniption in a store.

Focused excerpt from -​A Child’s Journey Out of Autism: One Family’s Story of Living in Hope and Finding a Cure by Leeann Whiffen; eBook 2009 - with < My Thoughts, by Sara Luker >

16% Finally home, I hurry to the den and turn on the computer. I place my fingers on the keyboard and type “AUTISM”. My pinky finger hangs over the Enter key. My fear has a definition. I am afraid of what I might find.

17% That evening, I go to bed unable to sleep, I go back downstairs. I force myself to look at the “Signs & Symptoms” checklist.

Inappropriate laughing and giggling. CHECK!

No real fear of danger . CHECK!

Apparent insensitivity to pain. CHECK!

May not want cuddling or act cuddly. CHECK!

Little or no eye contact. CHECK!

Difficulty expressing needs. CHECK!

Not responsive to verbal cues. CHECK!

Sustains odd play. CHECK! CHECK! CHECK!

Inappropriate attachment to objects. CHECK!

Insistence on sameness; resists change in routine. CHECK!

My eyes filled with tears as I looked at this description of my son on the computer.​24% Dr. Coates tells us, “You are fortunate to have caught this at such a young age.”

A part of me withered away today as the formality of the diagnosis crushed my dreams for Clay and what he could become – the barometer from which all parents measure their own successes and failures. How did this happen? I search myself…

28% “I want to know what is at the root of Clay’s autism.” Once home, I head for the computer and immerse myself in research once again. I’ve heard about a Dr. Jepson… maybe he can help Clay.

35% We play with Clay in the waiting room until the nurse calls us back. Dr. Jepson stands to shake our hands and says hi to Clay as he pats him on the back. I’m taken back by how young he looks. He begins by walking us through the biomedical approach to autism using a PowerPoint presentation on his laptop.

It begins with genetic susceptibility coupled with an environmental insult of one kind or another.

37% A combination of insults on a fragile immune system. “Because of their diminished immune system function many children more prone to ear infections, eczema, and sinusitis. Most of the time antibiotics again are prescribed to treat these illnesses, further exacerbating the problem.”

I look at Dr. Jepson in disbelief. “Are you telling me Clay’s autism could have been a result of any or a combination of his vaccines, multiple rounds of antibiotics, extreme constipation alternating with diarrhea, ear infections, red cheeks, ears, and nose?”

4% Diagnosis without directions: this is what it is to be told your child has autism. It is my intention to help you understand why that is and then to change that reality by teaching you what to do to improve the prognosis. I will introduce you to the boy who introduced me to autism… it was attempting to understand Dar that taught me to understand autism.

5% You can make a curative difference and yes it’s hard but it’s also fun. It does however take loads of time and effort. And that’s why I’ve called this book ‘Miracles Are Made’ because in fact they are.

8% I did it myself, with the help of others who were willing to see me as the expert in my child’s development, and so can you.

9% Dar was labeled PDD (Pervasive Developmental Disorder).At four years of age, Dar’s IQ was placed a nine-month-old level leaving him in the extremely retarded range. I began to read about autism at the same time that I applied to adopt him.

12% I believed understanding Dar was the key to figuring out how to teach him. That’s when I decided to figure this disorder out, change the course of my own children’s lives, and share the magic with whoever else wished to know what I had learned.

14% Brain disorders always present as clusters of symptoms rather than just one singular problem. For example, a child with autism may have sleep issues, depression, or sensory-seeking behavior that is only satisfied by great big deep pressure hugs, and tics, while another with the same disorder may have outbursts, periods of despondency, contact avoidance, seizures, and self-abusive behavior.

Thus it is true to say that ‘autism’ is a group of symptoms rather than a particular thing. And that these symptoms, these clusters, are connected and reinforced by each other so as you heal one you affect the others: While you heal the autism you smooth out all the behaviors created by the sub-disorders contained within it.

< My Thoughts > “…connected and reinforced by each other so as you heal…”

“The goal of neurofeedback is for the patients to come to recognize the onset of electrical negativity and then to push in a positive direction. Attention Deficit Hyperactivity Disorder (ADHD) subjects train their brains to produce fewer theta waves and thereby more beta waves.” They also learn how to sustain pleasant feelings longer, Ulrich, K. (2006).=============

Focused excerpt from -​Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, & the Meaning of Normal, by Kerry Cohen, eBook 2011; with <My Thoughts> by Sara Luker1% Ezra twirls & dances through the world, laughing, humming. I am afraid I don’t have the language to describe him the right way.​How he is just a child, like any other child, and also how he is different. How he is so much more, always, than you think he might be.

3% He is fine. His autism, even, is fine. Ezra’s autism changed us, yes. This moment held inside it everything that has been harmful to us about his autism.

The first time I hear the word ‘autism’ associated with Ezra, he is only a year old, and it comes from his young baby sitter. “I think Ezra’s on the autistic spectrum,” she states.

I want to claim that time back. I want to go back to that moment when she said Autism.

I would never be the same. My son was stolen from me. How dare anyone take that process of discovery from me.

5% He had normal eye contact. He plays normally with most toys, albeit sometimes in rigid ways. But what about his poor eating? No pointing & crying when songs end.

< My Thoughts >

Parents in denial tell her, “School just doesn’t get my kid.” The severity of the child’s ‘interactive difficulties’ appears to influence what the parents do next.

Focused excerpt from -​He’s Not Autistic, But…How We Pulled Our Son from the Mouth of the Abyssby Tenna Merchent, eBooks 2007; with < My Thoughts by Sara Luker >

52% I didn’t want Clay to be diagnosed with autism, even if it was just Asperger’s. I didn’t want him going through his whole life with that label, the burden of being required to tell teachers, counselors, and anyone else who might care for him.

< My Thoughts > “I didn’t want him going through his whole life with that label…”

For some, it's a godsend. For others, it's a stigmatizing professional opinion—and sometimes even a misdiagnosis. “A label changed our life.” Those in favor of labeling point out that the best treatment starts early: The quicker you pinpoint what’s ailing your child, the faster you can get him extra support or even medication. There is also relief in being able to ‘blame’ a medical diagnosis.

​52% I was afraid it would influence their expectations of him and his behavior, and become a self-fulfilling prophecy.

At this point in time I had taken Clay to anyone I thought might be able to help.

Two pediatricians

Osteopath

Homeopath

Ear, nose, and throat specialist (ENT)

Allergist

Naturopath

Emotional healer

Herbalist

Speech therapist

Occupational therapist

Immune disorder specialist

The osteopath and herbalist were the only two who seemed to be helping. All the others said they could help, but we didn’t see any results. With the strict allergy diet, and removal of incoming aluminum, Clay’s head-banging and toe-walking had almost stopped, but he still wasn’t speaking. He was cranky, sickly, and not sleeping well.

Focused excerpt from -​101 Tips for the Parents of Boys with Autism & 1,001 Tips for the Parents of Autistic Boys, by Ken Siri, eBooks 2015 & 2010; with < My Thoughts > by Sara Luker

5%/1,001 If your pediatrician isn’t seeing what you see, don’t wait for him/her to come around. If your child is under the age of three, contact your state’s early childhood intervention program and ask for an evaluation. You can also visit a developmental pediatrician or clinical psychologist trained in diagnosing ASD.

5%/1,001 Don’t ignore your inner parent voice. If you think professionals are off-base, don’t dismiss your instinct because you’re “just” a parent, and he/she is a highly esteemed professional. Get another opinion.

4%/1,001 Parents of autistic children need to adopt the mentalities of both a researcher and a warrior. As both general and soldier in this fight, you must take ownership of all aspects of treatment, education, therapy, and organization as if preparing for battle.

19%/1,001 Also remember once your child has an official diagnosis they are entitled to Medicaid, which has some pros and cons and is covered throughout the book. Your child can qualify for Supplemental Security Income (SSI), but this and the Medicaid benefits will only go so far. If either parent is a veteran, there may be VA benefits or services available. Check online for biomedical treatment options covered by TRICARE (Military entity). Also check on Supplements, Respite Care and other programs like STOMP and Autism Salutes (also military).

5% < My Thoughts > Your pediatrician can recommend a specialist…

In the ‘know the protocol’ department…determine what your insurance company requires to change pediatricians, get referrals, and/or pay professionals on ‘their list’. We found out the hard way when we were told… "if you had been referred to someone on our ‘list’ we could have paid for it. Now, after-the-fact, you will have to pay that $1,000 plus out-of-pocket." Ugh! Even/especially Medicaid has a payment protocol. They may need several months notice about providing services or payments.END of BLOG: #2 "What to do While You Wait" - Diagnosis, Denial, and Doctors with < My Thoughts > by Sara Luker=============NOTE: Next in the What to do While You Wait is - The BLOG #3 Series: #3A Motor & Communication; #3B Cognition; #3C Social & Daily Living Skills. Enjoy!Disclaimer: Just to let you know that I, Sara Luker, have put forth my best efforts to create the extended book reviews presented here on this website. I have permission from the authors to publish these Extended Book Reviews. This is just a sharing of stories of those who have gone on before you. Please, understand also that all health matters ALWAYS require professional medical decisions, diagnosis, and treatment by highly qualified and licensed individuals.

Recently, I have added “What to Do While You Wait” to the website. This collection of information is for educational purposes only. My hope is that you will not feel alone when dealing with the mysteries of Autism Spectrum Disorder. Know that I, Sara Luker, receive neither financial rewards nor other interests derived from this website. This has been created purely for the readers sharing information and for your enjoyment.

Regards,Sara Luker=============

​​Please go to my Homepage Navigation Menu (3 little horizontal lines 'stripes' in upper left-hand corner of the webpage screen) for all each complete Extended Review with References, by book title; where you will also find LINKs to Amazon to view all books, if you wish. Enjoy!